If Simon Tovey gets anxious before using the bathroom, you might assume his panic is linked to his learning disability. Maybe the public convenience is unfamiliar?
Yet Tovey’s fear is the result of the abuse he suffered at Winterbourne View assessment and treatment unit. He featured in the 2011 Panorama expose of the privately run unit near Bristol where he was kicked, punched, verbally tormented – and threatened with having his head put down the toilet.
Tovey’s mother, Ann Earley, says of her son, 40: “The Simon that returned to us was not the same one who left. He was profoundly affected and unable to put into words how he felt. He has a long-term fear of toilets – that’s just one small thing. The other impact is incalculable, like his fear about what’s going to happen next.”
The fact Winterbourne View was shut and six care workers were jailed has not lessened the psychological impact on victims. Tovey, unable to articulate or comprehend his experience, now lives in supported housing near his mother in Wiltshire. Earley says she was racked with guilt: “I’d failed to protect him. I was dealing with the fact he’d been abused while thinking how best to support him. It’s maelstrom of emotions.”
Earley has been helped by the charity Respond, which won a £25,000 Department of Health contract in April last year to run a free, specialist helpline one day a week for victims of institutional abuse and their families. Funding for 2014-15 has just been renewed, so the year-old helpline will continue. Callers receive emotional support, advice or referrals to other services.
Respond, formed more than 20 years ago to focus on the impact of abuse and trauma on people with learning disabilities, also offers individual or family counselling for individuals, their families and friends. The London-based charity supports around 120 people a week, has five therapists and gets referrals from health and local authorities to provide advocacy and training for professionals.
The helpline is unique. The lack of emotional and psychological support for people with learning disabilities – it was two years after the Winterbourne scandal that the helpline finally launched – speaks volumes about their status in society. Noelle Blackman, Respond chief executive, criticises traditional assumptions that learning disabled individuals cannot benefit from counselling. “There’s an attitude that people don’t have an emotional life. It’s an othering of individuals, they’re not seen as being fully valid, and that extends to their family.
Among the families Respond is counselling is that of Connor Sparrowhawk, the 18-year-old whose death at a Southern Health NHS foundation trust assessment and treatment unit was found to be preventable. As his mother Sara Ryan suggests, the absence of any automatic support system after cases of abuse or neglect reflects how little people with learning disabilities are valued by society.
“It is too easy to dismiss people with learning disabilities and not listen to them,” says Ryan. “This extends to the family too.” Sparrowhawk’s sister Rosie, 21, had some well-meaning but ultimately unsuccessful sessions with her university-based counsellors when she had to repeatedly explain the social care system. Optimistic about Respond’s specialist help, she adds: “When you’re scrabbling around for [professional] support … you need someone who can talk in an appropriate way.”
Respond has a long-term approach and is usually commissioned for a year’s worth of counselling sessions. The charity uses talking therapies, creative materials such as paint, or doll-like figures. However, as Blackman says, adults often resist anything playful because they have been infantilised in institutions.
As well as therapists, clients have case managers who link to their everyday support network. Involving someone’s social and care network with what’s happening in therapy helps encourage people to remain in community-based services, rather than inpatient settings. Care workers, for example, get simple versions of Respond’s practices.
Respond also facilitates Winterbourne family days that, every couple of months, unite some of the relatives of those abused. As Simon Tovey’s mother says: “It has given me strength to come to terms emotionally with what has happened and perhaps the ability to forgive myself.” Family days so far have included sharing experiences and talking about issues such as mental health law.
Tara Bowen has an adult son with autism and works on the helpline, as a well as being a Respond counsellor. She can refer callers for an assessment that will lead to counselling. One recent caller was beaten for refusing medication but neither the staff nor his family believed his complaints. Bowen says: “Callers are reaching out, they are desperate. It’s important they’re believed because all through their lives they haven’t been.”